The day the world began to shrink

Three years ago today is when my son’s world started to shrink.

It is also the day that Bristol Children’s Hospital saved his life.

His spine was badly curved and crushing his internal organs. His ribcage on his left side was tucked inside his hip bone and he was struggling to eat or drink. Without the operation to insert spinal rods he probably only had one more year of life and it would have been a horrible way to die, crushed from the inside.

Adam has always been disabled.

He has always been a full time wheelchair user.
He has always needed assistance.
But he always had a great life.

Saving his life and improving his health should only have increased that greatness?

Why would it shrink?

My little eight- year-old boy had weighed only 14 kilos. We had hoists at home but I could still carry him everywhere. He rode his bike, he went to the skate park, we went to the zoo, had days out with friends and did whatever we wanted to do. We had created a mobile bathroom in our car with a fold out bed and a commode toilet chair. It needed two of us to lift him and move equipment – wheelchair, bed, toilet, child and two adults in the back of a car, even a big one, is not easy. We did our best to cover the windows and to park in a sheltered spot but it lacked dignity and I am actually filled with shame that I ever sat my eight-year-old son on the toilet in the back of our car. But it enabled us to go out and enjoy life.

After the spinal surgery, my little eight-year-old boy could not be lifted. It hurt him. He needed much more support across his body as, despite being propped up internally by metal rods, he lacked the muscle to support this new, taller, straighter body.

It took many months to recover, and for the first couple of months he suffered so much that I regretted having put him through the surgery. He suffered to a point where I regretted putting him through it almost every second of every day. But eventually things improved. He slowly started to eat and digest food better. And then he began to enjoy food, which was amazing to see.

Within two years he had doubled his weight. In the three years since that surgery he has gone from wearing clothes intended for a five-year-old, to clothes intended for twelve to thirteen year olds. He is now eleven years old and a healthy boy.

He is suddenly almost as tall as me.

But whilst he has grown bigger, I have just grown older. My back problems have worsened and I can no longer lift him for a cuddle, let alone anything else.

At home we manage quite nicely, but a child of eleven needs so much more. He needs to go swimming, out for milkshake, visits to the seaside, days at local attractions, shopping and lunch out with friends, trips to the cinema with drinks and popcorn. Every child deserves to have a full and fun childhood.

But he can’t – and all because of a lack of usable toilets for disabled people who cannot self transfer.

And this is why I can’t stop thinking about Changing Places toilets, talking about a lack of them and pleading with businesses and councils to become inclusive.

I put my son through so much so that he would live; now I have to make sure that he is living life to the fullest, and a lack of access to toilets should not stand in the way of living a great life.

So please spread the message about the importance of Changing Places toilets. It might not seem like a big deal, but you might just be helping a child like Adam live a better life.

Thank you. x



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